Battling autism: Lawmaker wants to require insurance coverage

LAYTON — Five-year-old Jaden Petersen focuses intently as he traces the dotted outlines of numerals on a piece of paper. Therapist David White sits next to him at a low table.

The two have an agreement. For each row of numerals Jaden completes, he gets to pick six Lego blocks out of a bag, which he will then assemble into a jet fighter plane.

Throughout the exercise, when Jaden talks to him without looking up, White draws his index finger to his nose and prompts the rumple-haired preschooler: "Jaden, look at me. Look at me in the eye, please."

Jaden looks up. "Please, can I have them?" he asks again. White hands them over and searches the bag for three more.

The ongoing exchange is part of "applied behavioral analysis," an intensive, early treatment for autism spectrum disorders that focuses on one-on-one interaction between a child and a counselor.

Legislation sponsored by Rep. Ronda Menlove, R-Garland, requiring health insurance providers to cover the treatment up to $50,000 a year will come before lawmakers in the new session that begins Monday.

It's the second go-round for those in search of coverage for autism disorders. In 2009 a similar bill failed as critics cited problems with a mandate-approach to insurance coverage that could financially hurt small businesses by increasing premiums

But the Utah Autism Coalition cites studies that show treatment may be the best chance that up to 47 percent of autistic children have to lead normal, productive lives. And it says public schools and mental health centers are limited with long wait lists.

The Petersens said they got lucky.

A few months before her child was diagnosed, Petersen's employer was bought out. She had to choose to either stay with the division whose headquarters remained in Utah, or jump to the one picked up by a Florida company.

Either way, the family would remain in their Layton home, and the Utah division was more in line with her career. But she chose Florida.

"Something just compelled me so strongly that I had to take that job," she said. When Jaden was diagnosed three months later, the importance of that decision became clear.

Jaden had difficulty understanding facial expressions and emotions. He rarely made eye contact. He didn't get social interactions. When Jaden wanted something, he would just grab it without asking. And frustrated with social interactions, he often became aggressive with others.

Like 28 other states, Florida passed a law in 2008 that requires health insurance providers to cover the intensive early intervention for autistic children. The Utah bill had initial support, but failed under the weight of the mandate approach and amendments.

Now the coalition is back for another try. Since April, the coalition has arranged meetings between parents and 86 of 118 legislators, so parents could more personally "talk about what autism looks like to them," Petersen said.

Menlove, who has been a special education teacher, said she is sponsoring the bill because "families spend tremendous amounts of personal dollars, mortgage their homes, and sell personal items, just to make sure their kids get treatment."

Petersen said that making an investment in the child at an early age can save the state up to $1.5 million in various costs over a child's lifetime. She said the proposal would add between 44 and 83 cents a month to most insurance plans, she said.

The Office of the Legislative Fiscal Analyst has not completed an estimate on the cost of the bill. Efforts to reach representatives of SelectHealth, Utah's largest insurer, and Regence Blue Cross Blue Shield of Utah were unsuccessful.

Judith Zimmerman, of the University of Utah Department of Psychiatry, said Utah has a higher percentage of children diagnosed with autism spectrum disorders, including Asperger's syndrome, than nationally.

Her recent study showed that in 2008, 1 in 77 Utah 8-year-olds were diagnosed with autism spectrum disorder, compared to one in 110 nationally. The difference may be attributed to more awareness and better diagnosis within Utah, but she noted it's an increase over earlier studies.

"The take home message is that the prevalence has doubled from 2002 and this accounts for the changes in demand for services," Zimmerman said.